Patient-reported outcomes: how important are they in HIV practice?

Just a few years ago, few people had heard of the term ‘patient-reported outcomes’ or ‘PROs.’ Now, changing technologies are driving renewed interest in PROs as a way to bring the patient voice into clinical practice and improve patient outcomes.

“It turns out that what is really bothering the patient and what is really bothering the doctor can be radically different things…. patients are true experts in their disease”

– Dr Janet Woodcock. Director, Centre for Drug Evaluation¹

PROs are reflections of how people feel about their own health, quality of life (QoL) and functioning, without interpretation by healthcare professionals.² The information is collected via manual questionnaires or by electronic software that enables people to self-report on issues like symptoms, response to treatment, undesirable side effects, and effect on function in between visits. The resulting data can be used to show how interventions affect aspects of a person’s day-to-day life, and to inform quality improvement. Advocates for PROs cite three primary reasons for why they should be adopted in clinical practice:³

Individuals are the best judges of the impact of their treatment on their pain, function, symptoms and QoL.
PROs are a valuable support for patient-centred care.
Systematic collection of PRO data informs efforts to improve quality and safety.

‘PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies’

Because effective combination antiretroviral therapy (ART) has transformed HIV into a chronic condition,^4,5 the burden of disease for people living with HIV (PLHIV) remains high. Moreover, because patients’ experience with treatments is a key component of their QoL and perceived health,⁶ PROs represent an important resource for clinicians, particularly when choosing the best therapeutic strategies. In addition, there is now evidence that the use of PROs can help to enhance the quality of patient-clinician interactions,⁷ patient satisfaction with care,⁸ and the quality of interdisciplinary support.⁹

But which PRO tool do I use?

Multiple tools are available to assess PROs in the context of HIV care and choosing the most appropriate tool will depend on issues related to content (i.e. what needs to be assessed?), setting (i.e. where?) and the intended purpose of the measures to be assessed (i.e. what will the information be used for?).

Generic QoL scales (e.g. MOS; MOS SF-36 and SF-12) have been used in the context of HIV infection,¹⁰ while disease-specific QoL instruments with a more accurate focus on the concerns of PLHIV have also been developed (PROQOL-HIV¹¹ and MOS-HIV¹²). In addition, PROs have been integrated into routine care to assess a variety of concepts specific to PLHIV (Table 1).

Table 1: HIV-specific PRO measures¹³

PRO category	Example(s) of concepts measured
Health-related QoL	Health-related QoL
ART and adherence-related views	Regimen fatigue Factors affecting adherence to ART Factors affecting readiness for ART
Healthcare-related views and experiences	Quality of care Quality of clinician–patient communication Interdisciplinary care Attitudes toward healthcare providers
Psychological challenges	Impact of HIV on self-concept Challenges of HIV survivorship
Symptoms	HIV-related symptoms
Psychological resources	Coping, resiliency
Self-management and self-care	Intention to adhere to HIV care
HIV-related stigma	HIV-related stigma and mechanisms
Body and facial appearance	Body change and distress Impact of facial lipoatrophy
Social support	Perceived social support
Sexual and reproductive health	Self-efficacy for HIV status disclosure, safer sex
Disability	HIV-related disability

Adapted from Engler K, et al. 2016.

Where can I get more

More information on the use of PROs in practice is available from the following resources:

Engler and colleagues reviewed the medical literature between 2014 and 2016 to create an inventory of HIV-specific PROs and concepts targeted over time.¹³

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The American Institutes for Research (AIR) has published principles of patient-centred measurement.¹⁴

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The International Consortium for Health Outcomes Measurement (ICHOM) is involved with standardising ways of measuring and reporting patient outcomes.¹⁵

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The International Society for Quality of Life (ISOQOL) publishes two international, multidisciplinary journals: Quality of Life Research and the Journal of Patient-Reported Outcomes (JPRO), together with a user’s guide to implementing PRO assessments in clinical practice.¹⁶

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References

The Prescription Drug User Free ACT (PDUFA) V. Clinical Outcome Assessments Public Workshop, April 1, 2015
FDA. Patient-reported outcome measures: Use in medical product development to support labeling claims. 2009 Available from: https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf (accessed September 2018).
Williams K, et al. Patient-reported outcome measures: Literature review. Sydney: ACSQHC; 2016.
Deeks SG, et al. The end of AIDS: HIV infection as a chronic disease. Lancet 2013;382(9903):1525–33.
Lohse N, et al. Survival of persons with and without HIV infection in Denmark, 1995-2005. Ann Intern Med 2007;146:87–95.
Protopopescu C, et al. Health-related quality of life in HIV-1-infected patients on HAART: a five-years longitudinal analysis accounting for dropout in the APROCOCOPILOTE cohort (ANRS CO-8). Qual. Life Res 2007;16:577–591.
Wilson IB, Kaplan S. Physician-patient communication in HIV disease: the importance of patient, physician, and visit characteristics. J Acquir Immune Defic Syndr. 2000;25:417–25.
Beck EJR, et al. Patient satisfaction with HIV service provision in NPMS hospitals: the development of a standard satisfaction questionnaire. AIDS Care. 1999;11:331–43.
Vachirasudlekha B, et al. Interdisciplinary HIV care: patient perceptions. Int J Health Care Qual Assur. 2014;27:405–13.
Preau M, et al. Health-related quality of life in French people living with HIV in 2003: results from the national ANRSEN12-VESPA Study. AIDS 2007;21(Suppl. 1):S19–S27.
Duracinsky M, et al. The development of PROQOL-HIV: an international instrument to assess the health-related quality of life of persons living with HIV/AIDS. J. Acquir. Immune Defic. Syndr 2012;59:498–505.
Hughes TE, et al. Construct validities of the Quality of Well-Being Scale and the MOS-HIV-34 Health Survey for HIV-infected patients. Med. Decis. Making 1997;17:439–446.
Engler K, et al. A Review of HIV-Specific Patient-Reported Outcome Measures. Patient 2016; DOI 10.1007/s40271-016-0195-7.
American Institutes for Research. Principles for making health care measurement patient-centered. 2017. Available at: https://aircpce.org/sites/default/files/PCM%20Principles_April182017_FINAL.pdf (accessed September 2018).
The International Consortium for Health Outcomes Measurement (ICHOM). Available at: https://www.ichom.org (accessed September 2018).
The International Society for Quality of Life Research (ISOQOL). Available at: http://www.isoqol.org (accessed September 2018).

Date of preparation: September 2018 Job code: 001/IHQ/18-09//1429

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But which PRO tool do I use?

Table 1: HIV-specific PRO measures13

Where can I get more

Table 1: HIV-specific PRO measures¹³